Friday, April 3, 2015

Autism Awareness?

April is Autism Awareness month. I am so thankful that there is a worldwide campaign to make others aware of what autism is... and isn't. It warms my heart to see people wearing blue in support of all our special kids...and adults!

But ironically, as a parent, I am not always interested in being made aware.

It may surprise you that I don't read other blogs. Clarification. I don't read blogs about autism. (I love a good fashion blog!) I discovered early on in this journey that generally speaking, not much good comes from me reading them. It's not that I don't value what other parents have to say; it just hurts too much.

Each particular child discussed on a blog is going to be either "ahead" or "behind" Joshua developmentally. Although, I know those terms don't accurately describe children on the spectrum; they all have their own strengths and weaknesses.

If the child is more advanced than Joshua it's really hard. I struggle with jealousy. I am sad for the frustration he feels everyday in not being able to communicate. I wonder if he'll ever reach the milestones that other child has reached. And when? And what will he look like when he is their age? I worry. Are we doing enough? Should I do what those parents are doing? I wish could read these things for their informational value alone, but I get too emotionally involved.

If the child is "behind" Joshua it's really hard. First, my heart goes out to the parents and their unique struggles. I feel for the child and their hurts. And then my selfish side ramps up and I'm thinking maybe Joshua will regress. What if his personality changes and he doesn't want to be affectionate anymore? What would that mean for our family? See, nothing positive. Even thinking "Oh, Joshua can do that thing the other child can't do" is not really positive to me. Because who wants to make comparisons that highlight the other child's challenges?

I'm even wary of books. Early on, my best friend recommended one to me that is written by a dear friend of hers. Their family chronicled the beginning of their journey with autism and gave many practical tips and ideas. There was one big (helpful) truth that I learned from this book, which I will write another post about, but mostly I came away confused and discouraged. The things they did for their son was not practical in any way for our family. I spent too much time taking as gospel the diet and therapy that is perfect for their son, but not for mine. I can imagine this book is helpful to many people, but not to me.

Also, the internet is full of misinformation, as we all know. And I just don't have the time to vet all these different sources. SO. What informs us?

First, I usually only read books and articles recommended by our therapists or teachers. They are the experts and know our specific needs. If they want me to tell me about cases similar to Joshua, I trust that information is going to be beneficial whether it's positive or not. I let them guide our therapy and our routines because they know our son.

Also, as mentioned before, I listen to my counselor. She is a professional, wise, godly woman who knows ME and how I tick.

I do love meeting other parents with children on the spectrum in person. It is an encouragement to talk about our lives and shared experiences. I guess the difference is that in person you get the whole picture. Not just snippets that are easy to bend in your mind.

Lately I've been able to live in the present with Joshua and enjoy each day with him; focus on his daily joys and achievements, as well as his personal goals. Joe and I are so grateful to have our team of experts guiding us through our journey. We're also overwhelmed and blessed from the support from sweet friends like YOU. Thank you for caring; thank you for reading.

P.S. I may or may not be back on Monday. After making it through this marathon of Spring Break, we have a teacher workday on Monday. I mean, love ya kids, but go back to school!